Here's the thing about me.

Now that I know the experience of medical gaslighting and also the opposite, feeling heard and feeling like I am a part of my medical team with at least some expertise, there's no way I'll accept the former ever again in my life, ever.

What does that mean?

It means the second I get even a whiff of dismissal from a medical professional, they are F I R E D.

I don't give a shit if they were having an off day. I don't give a shit if what I was saying about what I was experiencing just didn't penetrate. If I say I think something is wrong and a medical professional doesn't listen and at least consider it a part of the entire clinical picture, they will immediately cease to be a medical professional on my team. Full stop.

I give no second chances in this regard because back when I did, the results were catastrophic. As I was going through all of the medical stuff in 2021, that was the one and only promise I made to myself: My concerns will never, ever be ignored again.

My neurosurgeon - she's one of my favorite humans. I literally put my life and my brain in her hands and she delivered, 100%. If I ever felt dismissed by her, we'd be DONE. My PCP - she's amazing. I was going to get legal consult about being able to keep her as a PCP when MGH said I had to switch. That's how good she is. She is also no exception to this "no second chances" rule. I could go through all of my medical team and say equally glowing things. They would also be fired immediately if they ever dismissed a concern that I had.

So when I went to my follow-up ortho appointment for my foot last week and I said, "It often still hurts as badly as when I broke it and I think something more significant is happening," and she shrugged and said "your x-ray shows that you're healing as you should" and sent me on my way promising a PT referral that never came, I knew that was the beginning of the end.

I was up a lot of the night last night. I went to bed not being able to put weight on my foot - like, couldn't even wear socks. Couldn't let my blanket be on top of my foot. This had been happening intermittently and in an escalating fashion for the past week or two. We're seven weeks out from my break. I should be able to put weight on my foot. So I called my ortho doctor.

They could fit me in on March 5.

But also, I knew something needed to be done. The amount of pain I'm experiencing is not supposed to be happening, so I went to MGH urgent care.

They found a second break right where my most severe pain is. The ligament has also likely torn off of the bone. I might need surgery, but the doctor that I saw is going to recommend an MRI when I get into my new ortho doctor just to make sure.

But everything is fine, right?! Of course it is! I'm 45 and rolled my foot and broke it in one place and sprained it in two others - it's going to heal slower. I just need to give it time and do some PT.

Except that's not what happened.

I broke my foot, I broke a part of my ankle, and sprained another part of my foot when I rolled it and have been in near constant pain of varying degrees ever since.

What I'm most astounded by is the speed with which I made this decision. I was becoming increasingly frustrated because it took me like three tries just to get through to a human, and then to be told that I couldn't see my doctor for over a month? Nope. Immediately no.

So for now, I'm back in the stupid boot.

I'd be mad but my foot and ankle feel so much better that it's hard to be mad about that. So for now I just shuffle around and take one step at a time.

Very gingerly.

And waiting until my feet regain feeling after sitting criss cross applesauce.

Finding Humor

Probably the toughest part of my recovery is officially underway - breaking through the boulder of denial about the fact that I have a brain injury and actually saying it out loud and feeling the grief. I'm told acceptance comes at some point.

I've known since before my surgery that I would have a brain injury. In fact, I already had brain injuries because Marvin was causing quite a bit of inflammation and damage. For how long? Who knows. Years. Maybe (probably) decades. My neuro team all told me all of this. After my surgery, it's like I didn't believe them or something. I became so deeply entrenched in denial that there was nothing that was going to break me out of it. It was helping me return to my old self and it would have to be pried out of my cold, dead hands.

What I'd never heard anyone say out loud until I read this book that I'm reading now: The old me? She's gone, and she's not coming back. I don't think I would have heard it if someone had tried to say it to me sooner. In fact, I know that people have told me this and I haven't listened. I wasn't ready to hear it.

Something really magical has happened since I heard the author utter that sentence. At first, I was really, really sad about it. Like, big crying in my car type of sad. Like, randomly sitting at my desk and crying a little bit without understanding why type of crying. I've cried listening to and processing this book more times in the past week than I have in total over the past four years. But then once I was able to sit with the grief and give it some room for a bit, the relief I felt...I've never felt anything like it.

I could stop pressuring myself to get back to normal.

I could stop shaming myself for all of the things I can no longer do.

I could finally meet myself where I am instead of this imaginary, unattainable goal of getting back to where I was before my surgery.

I was free. Am free.

You know what happened after that? I stopped hiding it.

Two of my best friends and most trusted colleagues? I said it out loud to them. We talked about it. they validated, because it's really fucking hard. I cried A LOT about it. They listened. We made a plans that are manageable and centered around me asking for help, even when I don't know what I need. (woof. I'm feeling emotional even writing that. WHY AM I A CRIER ALL OF A SUDDEN. HATE THAT A WHOLE LOT.)

It's like this snowball that was rolling down a hill, and it's just going to get bigger. I am making broader plans to train clinicians on how to work with people who have brain injuries, because hot take: None of us has any fucking clue. Literally none. I want to, when I'm ready (NOT NOW OR EVEN IN THE NEXT YEAR), start a brain injury support group, because I know without a doubt that I'm not alone. I'm finding hope that I have been missing, and it's helping me find purpose again. 

First item on the agenda, though? I'm going to connect with the author of this book because she needs to know how much she's helping people. She's located in Maine. I'd literally drive wherever she is and take her out to dinner if I ever get that opportunity. That's how thankful I am about this.

I have to stop making fun of her first.

This is how I know I'm not at acceptance yet. This woman's book is lovely. Absolutely lovely. It's poignant, you can visualize what her grief process must look like, and she just does such an amazing job of discussing her lived experience as a brain injury survivor.

She described things that have helped her, like:

Starting a gratitude journal.

Writing affirmations, framing them, and hanging them around her house, all of which have to do with what she is capable of now.

Doing a portfolio of her accomplishments since her brain injury.

Finding the silver lining (my favorite of hers was when she found purpose in her family again when she realized that because she has a blunted sense of smell, she can cut onions without crying. Super sweet.)

Regaining the sense of self now that the old her is gone, and how that can help a person get back out into the world.

I could literally name like ten more. Do you know how many times I ripped on these ideas? As often as I possibly could. Intellectually, I know they're fantastic ideas. The part of me that is still grieving wants to hear literally none of it.

So I'll use humor to get me through, but there are several of her suggestions that I'm going to try while I do. Will all of them work? Of course not (ESPECIALLY THE SILVER LININGS ONE BECAUSE I HATE SILVER LININGS WITH THE FIRE OF A NOVA AND THANK GOODNESS MY HATRED OF THEM WAS NOT EVICTED WITH MARVIN BECAUSE THEY'RE BULLSHIT), but I want to try.

I finally want to try.

Bibliotherapy and Biting the Bullet

Friends, I started intensive vision therapy this week and let me tell you.

It's terrible and awful and also life-changing at the same time. Things are different.

I'm to do this intensive part for two full weeks, including weekends. The way that it works is that I'm laying on this bed...of sorts? With vibrating pads underneath it. The vibrating pads do their thing, then I look at this bright dot that changes colors, and there's some infrared stuff that goes on, but that's not the part that's making a difference. Or maybe it is. I don't know.

The tangible difference is being created by the rotation of the bed. Rotation is the wrong word, but it's the only one I can think of. It doesn't move me around in a circle side to side, but more in this oblong rotation up and down and diagonal. It's not fast, but it is movement. It moves in such a way that with the sensory deprivation of the pitch black of the room, it makes me feel like I'm five years old again in a moving car. I got so motion sick I almost had to stop the first two days.

And I do that for an hour every morning at 9:30.

I've had words for my vision therapist. She laughs - she's heard it all before.

One thing that I did not expect at all was how acutely I became aware of my brain injury. It's working specifically on that part of my brain, I can tell, because everything got harder even after day one. But that's by design - or so I'm told. Right now, what's happening is that this therapy is breaking down all of the accommodations I've made for the past 46 years of my life to compensate for the deficiencies that come from my eyes not talking to each other. I thought I was making progress with the regular vision therapy I was having.

I was not. Or, I was, but just not this type of progress.

I thought I was miserable before when I was adjusting to regular vision therapy.

I absolutely, without a doubt, was not. Now I'm irritable, overwhelmed, frustrated, nauseous, low-key dizzy, and either right on the verge of or in a full-blown migraine 100% of the time.

This may sound like an awful way to live, but this is legit how I felt most of the time, and I'd had some improvement in my symptoms, so mostly it's just frustrating and I'm mad because I feel like I'm backsliding. I know I'm not, though.

This might be among the most stressful weeks of work I've had since I opened my practice. Is it THE most stressful? No. Close to it, but no. It's just a signal that changes need to be made, and I have two fantastic people to hold me accountable to those changes. You know how I know something is changing? Even in the stress, I'm calm. I feel ok. We had a hard meeting earlier today, and you know what? I didn't freak out. Was my knee-jerk reaction to avoid? Yes, but instead I was able to lean in. I feel no panic, I feel no awful feeling of doom or like I'm going to burst into flames. Has it sucked? Yes, but it's absolutely not outside of the realm of things I can handle. It's so weird that I feel peaceful, but I do.

Also, I'm surer on my feet. Do you know how many days it's been since I've tripped over something or stubbed a toe or done something mindless to hurt myself? Five. Do you know what my all-time record is of number of days I've gone without tripping over something or hurting myself in some way? ALSO FIVE.

Also, my eyes don't take as long to focus on what I'm looking at.

I've also focused in on something important. Really, really, really important.

For the first time today, I acknowledged my limitations out loud that are due to my brain injury. Because I've struggled to accept that I even have a brain injury, that's for other people, there's no way in hell I can acknowledge the limitations that come with it. I struggle to communicate, I become so easily overwhelmed, and then when those two things collide, I become a total mess. That's to say nothing of the difficulty focusing, and all of the other stuff that I so easily put in the ADHD box when it's absolutely, without a doubt not that. This is different.

That's also to say nothing of the fact that I lost my ability to read. I think it's going to be coming back, but I can't be sure. I've also found a work-around that is listening to audiobooks, but that's not always how I want to digest information and also if I read something particularly compelling, I end up crying in my car, which has happened no less than four times this week alone with the book I'm currently devouring.

This author is talking about my brain injury journey, and at first I was incredulous: My brain injury journey? Whose brain injury journey is that? I don't have a brain injury. All of the things that the author talks about that she's heard from other people that have been really hard to hear or invalidating? I've said them to myself. No one has even needed to say them to me, because I stop myself before it even gets to that point. That's how self-invalidating I am about this. I'm cringing even writing about it.

Three chapters into this book, I signed up for a brain injury support group. I was still not ready to talk about it openly, but maybe I could to other people who had similar experiences.

I've been both ignoring the fact that I have a brain injury and been extra hard on myself because it shouldn't be this way. I've realized that I've been beating myself up for something I can't under any circumstances help for the past four years, one month, and eight days of my life. Every time I got frustrated because I was too tired to do what I was doing and I couldn't push through it. Every time I couldn't complete a task and didn't know what to do or even how to ask for help. Every time I actually asked for help, which was rare.

You know what I did in this meeting earlier today? I even called it "Playing the brain injury card" as if it's not a real thing and I'm milking it somehow. As if this isn't a debilitating injury that I'm going to be dealing with forever. Literally, forever.

So, I've discovered my March Madness goal this year, now that I know my thyroid tumor markers are still undetectable and I can put this on a shelf for another year - I want to walk away from my neuro appointments with better strategies to support myself and how to ask for more support from others, and how to be able to be open about my brain injury in a way that feels safe for me. I need to be able to learn how to articulate what I need. I am surrounded by people who want to understand, and if I can't give them the opportunity to both do that and be supported at the same time and not feel so alone, then what the fuck am I doing?

I could also beat myself up for not doing this work three and a half years ago, but I'm choosing to celebrate that I even came to this party instead of beating myself up for being late. But let me tell you, letting go of this next-level stubbornness is going to be one of the hardest things I've ever done, but also a game-changer.